My father went home still uncertain what to do. Then he had a series of five or six falls. The numbness in his legs was getting worse. He began losing the sense of where his feet were underneath him. One time, going down, he hit his head hard and had my mother call 911. The EMTs arrived, siren wailing. They put him on a backboard and in a hard collar and raced him to the ER. Even in his own hospital, it was three hours before he could get the X-rays confirming that nothing was broken and that he could sit up and take the collar off. By then, the stiff collar and rock-hard backboard had put him in excruciating pain. He required multiple injections of morphine to control it and wasn’t released home until near midnight. He told my mother he never wanted to be put through that kind of experience again.
Two mornings later, I got a call from my mother. Around 2:00 a.m., my father had gotten out of bed to go to the bathroom, she said, but when he went to stand up, his legs wouldn’t hold him, and he went down. The floor was carpeted. He didn’t hit his head and didn’t seem hurt. But he couldn’t get himself up. His arms and legs were too weak. She tried to lift him back into bed, but he was too heavy. He didn’t want to call an ambulance again. So they decided to wait until morning for help. She pulled blankets and pillows off the bed for him and lay down beside him, not wanting him to be alone. But with her bad arthritic knees—she was seventy-five years old herself—she found she now couldn’t get up either. Around 8:00 a.m., the housekeeper arrived and found them both on the floor. She helped my mother to her feet and my father into bed. That was when my mother called. She sounded frightened. I asked her to put my dad on the line. He was crying, frantic, sputtering, hard to understand.
“I’m so scared,” he said. “I’m becoming paralyzed. I can’t do this. I don’t want this. I don’t want to go through this. I want to die rather than go through this.”
Tears wet my eyes. I’m a surgeon. I like solving things. But how do I solve this? For two minutes, I tried to just listen as he repeated over and over that he couldn’t do this. He asked me if I could come.
“Yes,” I said.
“Can you bring the kids?” He thought he was dying. But the hard thing was that he was not. He could be this way for a long while, I realized.
“Let me come first,” I told him.
I set about arranging a plane ticket back home to Ohio and canceling my patients and commitments in Boston. Two hours later he called back. He’d calmed down. He’d been able to stand up again, even walk to the kitchen. “You don’t have to come,” he said. “Come on the weekend.” But I decided to go; the crises were mounting.
When I made it to Athens early that evening, my mother and father were sitting at the dinner table eating, and they had already turned the six hours he spent paralyzed on the bedroom floor into a comedy in the retelling.
“It’s been years since I’ve been down on the floor,” my mother said.
“It was almost romantic,” my father said, with what I can only describe as a giggle.
I tried to roll with it. But the person I saw before me was different from the one I’d seen just a few weeks before. He’d lost more weight. He was so weak his speech sometimes slurred. He had trouble getting food into his mouth, and his shirt was smeared with his dinner. He needed help standing from sitting. He’d become old before my eyes.
Trouble was coming. Today was the first day I really grasped what it would mean for him to become paralyzed. It meant difficulty with the basics—standing up, getting to the bathroom, getting bathed, getting dressed—and my mother wasn’t going to be able to help him. We needed to talk.
Later that night, I sat with my parents and asked, “What are we going to do to take care of you, Dad?”
“I don’t know,” he said.
“Have you had trouble getting your breath?”
“He can breathe,” my mom said.
“We’re going to need a proper way to take care of him,” I said to her.
“Maybe they can give him chemo,” she said.
“No,” he said sharply. He’d made up his mind. Even just the side effects of the steroids were proving difficult for him to tolerate—sweats, anxiety, difficulties with thinking and moodiness—and he’d recognized no benefit. He did not think a full-blown course of chemotherapy was going to make any radical improvement, and he did not want the side effects.
I helped my mother get him to bed when it got late. I talked with her about the help he was going to need. He was going to need nursing care, a hospital bed, an air mattress to prevent bedsores, physical therapy to prevent his muscles from stiffening. Should we look at nursing homes?
She was aghast. Absolutely not, she said. She’d had friends in the ones around town, and they’d appalled her. She could not imagine putting him in any of them.
We’d come to the same fork in the road I have seen scores of patients come to, the same place I’d seen Alice Hobson come to. We were up against the unfixable. But we were desperate to believe that we weren’t up against the unmanageable. Yet short of calling 911 the next time trouble hit, and letting the logic and momentum of medical solutions take over, what were we to do? Between the three of us we had 120 years of experience in medicine, but it seemed a mystery. It turned out to be an education.